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Pregnancy question


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#1 Kiwi

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Posted 29 January 2009 - 09:47 PM

Hello,

I'm curious to hear from any women who have been able to have children that have severe skin involvement ie. tight skin on arms and legs and curled over fingers.

I am 36 years old and am in two minds as to whether I can have children for starters... and if I can then could I pass on anything or even be able to take care of the baby? My hands have very limited movement in them now after 4 years with scleroderma.

Hoping to hear some positive feedback!
Kiwi

Diagnosed 2006 - Diffuse Scleroderma
Skin and lung involvement

#2 janey

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Posted 30 January 2009 - 04:59 AM

Kiwi,

I'm not one that can speak personally about pregnancy and scleroderma, but I can provide a link to our page on Pregnancy and Scleroderma. Also on this page is information about pregnancy and medications and pregnancy and autoimmunity, so be sure to take at look at the whole page.

I believe there are a few people in the forum that have had children since being diagnosed with scleroderma. I know for sure that we have a couple of super Mom's so I'm sure you'll hear from them.

Before making any final decision, please discuss this issue with your doctors.

The best to you Darlin',
Janey Willis
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#3 LisaBulman

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Posted 31 January 2009 - 02:45 AM

Hi Kiwi,

I was diagnosed three years before I had my first child. Most of my sclero involvement was on my hands and internal. It went very well until the end. I felt great during my pregnancy. At 33 weeks I went into preterm labor, spent two weeks in the hospital on bed rest going in and out of labor and delivered Emma at 35 weeks. She was 4lbs 15oz. After my daughter was born I still felt really good for a while. When she was 5 months old I was rushed to the hospital with severe pains in my stomach. They took out my appendix but two months later the pain was back. Many tests later and a few doctors they discovered the sclero had moved into my intestines. I continued to loose weight.. a lot of it... about 20lbs in a month and half. At my lowest I was under 100 lbs. I regained some weight and when my daughter was 18 months old I got pregnant again. I felt so great!!! But this pregnancy was MUCH different. At 20 weeks I started contracting and was put on bed rest with many meds to try to stop the contractions. At 25 weeks I was in full blown labor for three days. The doctors were giving me so many meds to stop the pregnancy I was becoming toxic. They prepared me to loose her and said I could only have one more dose of meds. If the meds didn't stop my contractions I was going to deliver her and she would be a little over 1 lb. For some reason after contracting every two minutes for three days and dilating to 2cm everything stopped. The doctors were amazed. I spent the next 7 weeks in the hospital, in a private room with no one to talk to and on strict bed rest. I had to ask to take a shower! At 33 weeks I delivered Grace 3lbs 13oz. She spent 6 weeks in the NICU and finally came home weighing 4lbs 9oz. Both of my girls are healthy now 8 and 10. At that point I was told no more children. I have never, not for one second, second guessed my decision to have children. Sometimes they are what keeps me fighting! Since my children my disease has been progressing. It could be the natural path of the disease though. You need to be prepared for the worst and hope for the best. Have a plan for family and friends to help you if you need it. Please feel free to ask questions!

Hugs,
Lisa
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#4 Jeannie McClelland

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Posted 31 January 2009 - 04:42 AM

Hi Kiwi,

I can't speak directly about pregnancy and sclero - I was diagnosed in time for our first grandchild. :lol:

But I can give you our link about the Causes of Scleroderma. There is one form of scleroderma that is an inherited condition, Familial Scleroderma, but it seems to be possibly the rarest form of all.

To condense and paraphrase a lot of reading that I have done, the feeling is that in families where an autoimmune disease occurs, there is an increased risk of another (not the same one) autoimmune disease occurring. However, the severity of one case is not a predictor at all of the severity of next case's (in the family) disease should one even occur at all.

Both Lisa and Janey have given you good advice. The only thing I can add is the suggestion that if you have a sclero specialist that you see, ask if there is a local OB/GYN that is familiar with pregnancy in sclero patients or one your doctor particularly likes and go for a consult.

I offer you my very best wishes too.
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#5 Kiwi

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Posted 31 January 2009 - 07:12 PM

Thank you for your replies - Lisa, yours was a bit scary! I have so many questions regarding my physical ability to have children - for starters I think the chemotherapy I had has put me into early menopause, but I also question my long term ability to care for myself let alone a child. In saying that there is a feeling of missing out if I don't.

New Zealand is such a small country so it's difficult to find specialists who know much about Scleroderma. All I know is that mine is still progressing and the skin is getting tighter....

Here's hoping...

Thanks again,

Kiwi
Kiwi

Diagnosed 2006 - Diffuse Scleroderma
Skin and lung involvement

#6 razz

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Posted 04 February 2009 - 06:58 AM

Hi Kiwi!

I just found out recently my oldest daughter is expecting her first child. We are very excited especially since this is my first grandchild but I am also nervous too. My daughter has posed the possibility of my possibly providing child care and she even moved right around the corner from me. I have the curled fingers and I know how difficult it can be managing a task such as a meal. I'm sure with positive thinking I can handle the bottles, diaper changes and most of all the cuddling. Most likely I'll need a backup plan like an occasional drop-in from my mom. Either way I am looking forward to this new bundle of joy!

I wish you the best in whatever choices you make. Anything is possible.

Warm wishes,
Razz
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#7 Jeannie McClelland

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Posted 04 February 2009 - 07:26 AM

Hi Razz and Kiwi,

Have either of you thought about seeing an occupational therapist (OT) and finding out what they would recommend to make child care easier? It might help you make your decision, Kiwi, at least from the standpoint of whether or not you could manage a baby.

The 'center of excellence' where I go automatically sends their patients to the OT. I mentally scoffed at the idea, but it turned out to be amazingly helpful in all sorts of ways, so much so, that when I started to need O2 more of the time I requested another appointment.

A thought just popped in my head - some of the disposable diapers have a sort of repositionable velcro strip instead of the miserable adhesive tapes that can't be moved if you miss your aim. That's for you, Razz, from one new Granny to another one-to-be. :) Zillions of congratulations - that's so exciting.

Razz, I watched your You Tube video yesterday. It was very touching - you are one incredible lady. Very pretty too, if you don't mind me saying so. :D

Best wishes to you both,
Jeannie McClelland
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#8 razz

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Posted 04 February 2009 - 10:24 AM

Jeannie,

You made me blush :D ! Aww shucks. Thank goodness for that bag of magical make-up I don't go anywhere without. It works wonders. These days I'll take any compliment I can.

By the way, thanks for the advice especially coming from a seasoned granny, I can use all the helpful tips you're able to pass along! I will look into diapers with the velcro strips. I figured that if I can shovel snow, push a lawnmower, trim bushes, power wash my car (even though I have to hang on to the hose for dear life), pump gas, etc., maybe I can try my hand on caring for a baby. He or she probably won't have the best hairdos or have all their snaps and buttons done right, but he/she will be very much loved.

Kiwi, I haven't been to an OT for quite some time, since the first year after my diagnosis. Jeannie's idea sounds like a great suggestion. I think I'll mention it to my rheumatologist and see if he can recommend some OT sessions.

Hugs,
Razz
Live well, Laugh often, Love much

#9 Amanda Thorpe

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Posted 04 February 2009 - 01:50 PM

Razz

Remember babies bounce if dropped :lol: , my nephew was dropped (not by me!) and rolled off the bed a few times as a bouncing baby boy! Now he's a hilariously funny, hansome young man.

In all seriousness I too have curled fingers and I also have no movement in my wrists. This means I can't properly hold babies so I miss out and will miss out when friends have babies. Some dear friends are about to have their first baby :lol: but I won't be able to hold him :angry: because although my family's bouncy I don't think everyone's is!

Congratulations by the way, I never had a relationship with the one grandmother I had, your daughter and baby are going to be very blessed.

Amanda
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#10 razz

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Posted 04 February 2009 - 06:58 PM

Amanda,

I always wondered why they're called bouncing babies! Babies can be resilient despite all our fumbling. I hope my future grandchild is as hilarious and handsome as your nephew too.

I too missed holding other people's babies because of my bent fingers and even understood when my nephew's wife let me hold her squirming baby just for a minute or two. Now I will be able to hold my own grandbaby without a time limit. I am a lucky ducky. And, if you lived nearby, I would find a way where you could hold my grandchild. :) That would be great!

Hugs,
Razz
Live well, Laugh often, Love much

#11 Amanda Thorpe

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Posted 05 February 2009 - 01:04 PM

Razz

I'm on the plane now!

I know, what about velcro...let's stick the babies to us so there are no worries. I'd suggest super glue but it's a bit harsh for babies skin, not our of course we could easily have a few layers ripped off and never even miss it. :lol:

Take care.

Amanda
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#12 razz

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Posted 05 February 2009 - 02:16 PM

ohboyoklahoma,

I think you hit on a great idea Amanda, velcro the baby to us, no problem. :lol: I was thinking of snuggly wrapping my grandbaby to your back or front with a shawl and then tie it around the shoulders, like in the old days. I like your ideas and sense of humor....so brilliant (maybe we could use syrup or honey instead of sticky glue).

Warm hugs,
Razz
Live well, Laugh often, Love much

#13 Jeannie McClelland

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Posted 06 February 2009 - 04:37 AM

Hey Amanda and Razz,

They do have those shawl sorts of things to sling babies to your front - I think they're called - wait for it - slings! A lot of the trendy baby shops carry them, I think there are sewing patterns too, and it seems like everything is available on line! And y'know, it's actually a pretty good idea... Wish I'd thought of it when I got to spend 3 weeks with my new (only) grandbaby~ Live and learn, eh?!

Our wee Geordie is about 1800 miles away, but I have really good friends who instituted a loaner-grandchild program for me. BTW, it's my experience, so far, that even with 3 adults dancing attendance on a baby, it will take all three to do up the snaps, etc. correctly. And judging from the littlest loaner grandson's truly amazing cowlicks, a good hairdo is unlikely to be seen! His mum threatens to take a curry comb to him. :lol:

Big hugs!
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#14 anderson

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Posted 06 February 2009 - 05:07 PM

Dear Kiwi,
I don't know if this will help. I just had our first daughter. I was 33. I have skin tightening on my hands, arms and neck. I have pulmonary fibrosis as well.So far I do not have hand curling, during pregnancy I felt great!!I was told by my rheumatologist doctor that was because of relaxin a hormone released in pregnancy to help ready the joints by softening them anyway, I had issues with proteinuria. Release of protein in the kidneys excreted in the urine. It can take a toll on your kidneys. I also had highblood pressure as a result of increased proteins. I normally have low blood pressure. I had experienced swelling in my legs because the issues with protein and high blood pressure. They put me on bed rest very difficult since I have a hard time sitting still. I had a fairly easy labor but during birth my daughter's umbilical cord snapped in half and she lost some blood as a result. The OB said they thought it was a result of the combination of increasing blood pressure and scleroderma. She is now 8 weeks old and perfect. I am of course biased. I told my obstetrician that I want to have another child. My rheumatologist told me I could not try for at least 2 years (I'll be 36 then) after I complete treatment with cellcept. Which scares me. Good luck
I hope this was somewhat helpful!!
-Anderson

#15 shennen0820

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Posted 16 February 2009 - 04:11 PM

I would suggest a visit with a perinatologist...(aka high risk pregnancy doctor). Before you attempt to get pregnant to iron out details on "what if's" so you can be prepared.
Shennen

#16 Kiwi

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Posted 18 February 2009 - 06:02 PM

Thank you all for your replies.. I'm afraid I have some sad news.. I had my Follicle Stimulating Hormone test (FSH) as I "sort of" got a period and so on the 6th day (supposed to be the third) which was a few days after the "period" had stopped I got the blood test and my result is 39.1. Now I don't know a lot but I know that's bad!!!

Looks like I can forget having children... :(

Does anyone know about FSH?
Kiwi

Diagnosed 2006 - Diffuse Scleroderma
Skin and lung involvement

#17 Jeannie McClelland

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Posted 20 February 2009 - 12:34 PM

Ah, Kiwi, I'm sorry about the bad news.

I don't know a lot about FSH, but we have an article on Autoimmunity and Early Menopause on our Pregnancy page.

Are you able to see an infertility specialist? That might be the way to go.

Warmest hugs,
Jeannie McClelland
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